Good Evening. For those of you who don’t know me, my name is Julie Kilkeary. I am a parishioner here at St. Alexis Parish along with my husband Kevin and our three children. My oldest daughter, Faith, attends St. Alexis School. In celebration of respect life Sunday, Father Zywan has asked me to share the very personal journey that we as a family have walked.
It all began in March of 2003 when at the routine ultrasound of our first child; we were given the very devastating news that our precious baby had something terribly wrong with her heart. I’ll never forget that day, as that was the day that the earth stood still for me. We were sent to a pediatric cardiologist who confirmed that our baby had HLHS, the most severe heart defect imaginable. HLHS is a very rare condition where, for unknown reasons, the left side of the baby’s heart does not develop.
We were immediately presented with options. There was nothing further that could be done in utero to help our baby. Her defect would not effect her continued development in the womb, but if left untreated she would die just days after birth. Thus, leaving us with what became our first option… to do nothing. We would very simply bring our child to term, love her in the time given, and then give her back to God.
The only chance of survival is a very risky three–staged set of open-heart surgeries that modify the way that the heart functions, allowing the right side of the child’s heart to function as a whole. We were told that all 3 surgeries would have to take place in the first 3 years of our child’s life. The first surgery is done just days after birth and has less than a 65% survival rate. Additionally, our child would never have a fully working heart and with this comes its own set of limitations.
Our final option was to abort the pregnancy. The severity of our baby’s heart defect respectfully allowed for a medical termination of the pregnancy. According to the doctor, more than 50% of parents given this diagnoses choose this option. He told us that these babies are the sickest children that they see. In his eyes we were young- why would a couple starting their family choose the path of heartache when we could very simply try again.
I couldn’t believe the words we were hearing. My husband and I don’t believe in abortion, under any circumstances, so we knew this was not an option. Even after stating this he still tried to convince us that it would be the easier road. He told us that if it was because of our religion that he knows of Catholic priests who would support medical termination under these circumstances. As we learned more of the surgeries they too seemed to be less and less of an option. We were devastated. We left the office that day deciding that we would have our beautiful baby, love her in whatever time we were given and then let her go. We prayed for acceptance. What happened next was something I almost can’t even put into words. I went through such a process of grief and sadness, yet with each passing day the tiny life that was growing became more and more a part of me. My husband and I began to question our decision. We asked God for His guidance. I believe that God spoke to us throughout those final weeks of my pregnancy, leading us in the direction of help and giving us the strength to withstand the challenges ahead. We decided to name our baby Faith and she was born on July 29, 2003. Faith had her 1st open heart surgery at just 2 days old, her second just 4 months later. She did well with both. Faith was the best of the worst-case scenario.
At home our life was amazing. There was no question that we had made the right choices. Faith had endured a lot but it didn’t seem to effect her development. We received the news that we were expecting our 2nd child. Once again the ultrasound revealed a daughter. However, this time our daughter had a completely healthy heart. We were so grateful. All that was left was Faith’s final surgery and then we could get on with our lives. But we were not the authors of this story.
Faith was in heart failure and was no longer a candidate for the final procedure. We had no choice but to list her for a heart transplant. This devastated me. Faith received her new heart on January 10, 2005; she was just 17 months old. We will never be able to express in words our gratitude for this gift of life. All we can do is ask God to touch her donor family in a special way.
Today, Faith is as happy and healthy as any other child. Faith has endured a lot and I won’t speak lightly of this. However, she has been given the chance to know God and His love has made her the happiest child I have ever met.
Faith came home just 2 weeks after receiving her transplant. Her new heart instantly transformed her from a very sick and weak child to one who is in perfect health. Our second daughter was born less than three months later. I wish I could say that the birth of our daughter, Olivia, was a breeze compared to what we went through with Faith, but I cannot.
The moment that Olivia entered the world I knew something was terribly wrong. Olivia was in distress and was immediately intubated and placed on a ventilator. I couldn’t believe what was happening. I thought I was having a terrible dream. We had absolutely no prior indication that anything was wrong with Olivia.
Once Olivia was stabilized she was transferred to the same Children’s Hospital that we had just left with Faith. There, doctors began what would be the beginning of numerous tests to find out what was going on.
The tests showed that Olivia was cognitively intact. However, she was severely neurologically impaired. At the time it appeared that she needed the assistance of a ventilator to keep her alive so once again the fate of our child was in our hands. We were being given the choice whether our baby would live or die, as Olivia failed every effort to be removed from life support. The choice was we could have our daughter undergo a lifesaving tracheotomy procedure where Olivia would come home with the help of a breathing machine, or we could hold our beautiful living baby while doctors disconnected her from life support only to watch her die in our arms. I really want to communicate this part because I feel that it is vital for you to understand. Our child was at no time brain dead. The thought of watching this beautiful baby look at me, her mother, while she gasped for the ability to breathe, as I sat there and did nothing seemed horrible.
Yet still, this was the most difficult decision we have ever made. I wish I could say that I was strong, that I stuck to my beliefs to choose life at all costs, but I struggled more than imaginable. Doctors and nurses alike thought we were in denial. In there eyes there was no choice Olivia was severely disabled. Even if she were to survive her first year she would never have a fully working body. What quality of life would we be choosing for our child if we chose life? I remember one day crying at her bedside telling my husband that maybe we should just let her go when he looked at me and said “Julie, if God wants our baby, do you think He’s going to let this machine stand in His way.” And that’s when it dawned on me. This was not our choice, we were chosen.
Olivia was brought home on a ventilator. She was physically devastated but her eyes showed such life. We were told that Olivia would never walk, never talk, never have the use of her arms and would never go to school. She was going home to what was considered palliative care. I was so scared. I had no idea how I was going to care for this baby.
That was almost five years ago. This past spring Olivia won student of the year at the WPA School for Blind Children where she attends school. Olivia was recognized in front of the entire school for the outstanding accomplishments she has made in her first year. She was submitted for the award among countless other children of various ages, one more amazing than the next. In their recognition they said and I quote “ Olivia is an immensely talented and intelligent little girl who tries very hard throughout her entire school day. She fights (and wins) battles concerning her health everyday and continues to come to school to flourish and learn. Her family and educational team are so proud of her!” We are so proud of her as she has taken her disability and gone miles further than we could have ever expected. She has learned to drive her own power wheelchair that is operated using the movements of her head. In addition, she is being taught to communicate with the aide of a computer. More importantly the profound impact that her life has had on every person that she touches is miraculous. Olivia is a living saint. She is incapable of sin and has blessed our family abundantly.
Psalm 139: 13-16 say “You made all the delicate inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex. Your workmanship is marvelous and how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day has passed.”
I don’t feel like I have a full understanding of what we as a family have endured. I can tell you that loving my girls is the hardest love I have ever been asked to give. I have bled tears for this love. But there lives have brought our family such joy and closeness. We have never given up. Almost 2 years ago we were blessed with our healthy son, Kevin.
In life when given a cross we can say, "I don't need this," curse God, and walk away from what He is asking us to do. We can hang our heads, go numb, and roam around lost and defeated. Or, and this is the hardest one, we can say, "Thank you, God. Thank you God for giving me the chance to have You carry me.
I know God has carried our family through the most difficult time of our lives. Through our suffering He has given us a message. And that message is that God does not make mistakes. We must always choose life.